Coeliac positive blood test?? Endoscopy??

Hey a few months ago I got sick of always feeling bloated.. I got a blood test and tested a weak positive. I was feeling too sick to carry on eating gluten so I stopped completely meaning I can't have the endoscopy. I'm wondering is there any need for the endoscopy? A positive is a positive right? And if I'm feeling better then... i dont know.. advice??

7 Replies

  • Yes a weak positive is still positive. Mine was too. It seems bananas to have to go back to eating gluten to prove that you're coeliac with an endoscopy but that's the only way to get a to get a diagnosis and plugged in to the NHS properly to check your bone density etc. I can't say the endoscopy is great fun but its over in a minute and I'd have it done again if I had to.

    If you really don't want to eat poison for 8 weeks then I'd try to get your GP to do a full blood count to see if you're anaemic. If you've been coeliac for a year or two your calcium levels will be down - I was told to eat a matchbox size of reduced fat cheddar a day, drink milk etc. Your GP might give you some Vit D and Calcium tablets though if you're on good terms with them! They might also agree to do an annual gluten antibody screening blood test (like you've just had done) but they'll likely say get the diagnosis done properly of course.

    There are other issues you might have encountered - gluten free bread from supermarkets has massive amounts of insoluble fibre in it which can keep you in the small room for too much of your life! If that's an issue you need bread with mostly SOLUBLE fibre instead - M&S bread and Schar's bread are good for that.

    Good luck!

  • Great help thank you!

  • My daughter tested positive for Celiac and be cause she was high positive the gastrointestinal dr said there was no need for her to continue eating gluten for the scope. They still diagnosed her Celiac after the scope. Everything Ive read says one has to be eating gluten for an accurate diagnosis. I guess this is not the case based on what her Gastrointestinal Dr. said. Most confusing I wonder if she should see a different Dr?

  • It does sound an odd thing for the Dr to say and from a patients perspective you don't want to go through an endoscopy to get a negative result if you do have CD.

    I believe damaged villi take a couple of months to get back to 80-90% of what they should be after stopping gluten so If your daughter's endoscopy was soon after the blood test, perhaps the Dr thought the damage would still be there to see so eating gluten wasn't so important.

  • Maybe, she quit gluten on November 10th and her scope was in January so it was a couple of months later. Still makes one wonder though? Thinking genetic testing might be a benefit to determine if she has the two genes required to have Celiac. Nobody in our family has the disease as far as we know.

  • The blood test is an inexact science in many ways but finding you have one of the genes doesn't mean its necessarily been switched on...that might never happen or perhaps in 20 years of course. CD can be so difficult to spot though. My youngest daughter has it but her only symptoms for around 6 years were chronic headaches (which I've never had). It was only when I was diagnosed that she got tested.

  • Headaches seem to be another symptom that goes along with Celiac. My daughter has been gluten free for two years, however, still suffers with them. I read in the paper the other day they have found a cure for peanut allergies, maybe one day soon, they will find a cure for Celiac disease!

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